It’s that time of year again where my Saturday nights are taken over by X Factor. I’m not ashamed to admit that I love it! I’ve never been one to be emotional when watching X Factor, the ‘sob stories’ never really pulled on my heart strings that much. However, last night was different. Duchenne has changed everything, even to the point that watching a show like X Factor is enough to set the tears off. I hope one day that these feelings will ease, and I can live a day without having the constant Duchenne black cloud above my head, but I can’t see it happening. Everywhere I look, everything that happens, I always have this thought in the back of my head that Hugo will never be able to have the same opportunities as the rest of us.
The first thing to prompt that heavy feeling of sadness was a young boy band, five boys aged 17-21 years old. Hugo will never be like that. He will never be a regular teenager. By the time he hits 17, he will be fully wheelchair dependant and most likely on a ventilator in order to keep him alive. Seeing the parents watching their sons with huge proud smiles on their faces reminded me that I will never see Hugo living the life that he should have. Of course I will always be proud of Hugo, hugely proud of him, and he will always be encouraged to reach his dreams no matter how many obstacles may stand in his way. But I can’t help feeling heartbroken that he won’t be able to live the life he deserves and this stupid thing called Duchenne will control his future.
Then there was Christian Burrows. Singing a song he wrote about his baby brother who’d passed away. The lyrics had an extra meaning for me, knowing that one day, Riley and Jasper will feel that way. Lyrics like ‘imagine what we could have done, imagine what we could have been’ and ‘I wish your face was still around with that cheesy smile’. I had to walk out the room afterwards to have a few tears to myself. It was just so poignant. I’m sure that it touched everyone that watched it, but for me it carried extra meaning. At the minute, the boys have absolutely no idea of the pain and heartache that awaits them in 15 years time. It’s something I will never tell them, I don’t want them to live their life dreading what’s going to happen. I will be the one to carry that apprehension, not them.
It is becoming apparent that no one truly understands just how damaging Duchenne is. It’s hard for people to imagine what lies ahead for us as parents when Hugo is still a relatively normal child right now. The fact is that in his late teens he won’t be able to feed himself, dress himself, wash himself, or even breathe by himself. He will eventually become ‘locked in’ until his body literally can’t fight it any longer. This was starting to drag me down again last night, but this morning I found comfort in some words that Ricky Tsangs parents had wrote on the day of his funeral. They said that although Duchenne has taken their child away, it made them have so much more time with him. His time may have been brief, but the time he spent with them in total is much longer than the time most healthy kids spare to their parents. Although Hugo will only live to be in his 20s, we will get so much time with him throughout those years. Hugo won’t be out with his mates avoiding his parents, or out drinking all night as a young man and spending the day in bed with a hangover. He will be at home with us, allowing us to spend so much quality time with him. Its a comforting thought to know that when Riley and Jasper will be out and about doing their own things and eventually leaving home, Hugo will be here enjoying watching movies with his parents, eating his favourite Saturday night takeaways, doing jigsaws till all hours and chatting about the world with us. So although Duchenne has mapped his life out differently, there is a positive to every dark side.